Hello all. I have a question — two parts, but I suspect related.
For more than a year, I've had problems with not being able to speak clearly because of my tongue not moving properly. Since being diagnosed and starting treatment (3.5 months ago) it been gradually improving. I am at 5 weeks on my current dosage of meds and still have residual symptoms. Anyone else experience this with hypothyroidism, and if so, how long until it resolved?
I still have lots of mucin accumulation in my legs (no longer cold and waxy but still hard, unable to pinch skin). For those that had significant mucin accumulation at diagnosis, how long did it take to resolve (once no the optimal dose of meds)?
I suspect both issues are due to mucin accumulation.
P. S. I am already taking NAC (N-acetyl cysteine) and vitamin C, as well as sublingual reduced glutathione)
Thanks
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Joyya
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Re your tongue—I see from your profile that your B12 levels are good due to supplementation.
Do you also take folate? What are your folate levels like?
Tongue issues are often connected to deficiencies in B vits. I’ve gone for the most common culprits here. If you’re taking a B complex supplement you’re probably ok but I thought it would be worth checking.
Re mucin—my recollection is it took a long time (as in years) for there to be a noticeable difference. But then again, it took quite a while to find an optimal dosage of NDT. I’m now on 3 grains of self-sourced Armour a day and it’s more or less right for me (I sometimes think I’d benefit from a smidge more but that would involve buying more tablets and I just can’t afford it).
Yes, my B12 was 677 (153-655 pmol/L), so slightly over, which is fine.
Folate is no longer tested here, but I have been supplementing with 500 mg methylfolate daily for over a year, then added an Advanced B Complex (with the B-vitamins in their most bioavailable form) that also has 500 mg methylfolate, as well as B1 (Benfotamine form), as well as more than sufficient B2, B3, B5, B6 and B12 and 500 mg methylfolate, and biotin.
I've been supplementing with heme polypeptide for ~ 6 months, as I thought the hair loss was related to that. My hematology panel is still below mid-range so I plan to ask for a ferritin and iron panel at my next labs. I'm a dietician with a post grad degree, so my MD will probably agree.
I take 3,000 IU D3 and 100 mcg K2-MK7 daily and have for the last few years, so I see no reason to test that.
May be related to iron status, but I am taking the maximum amount of heme iron daily and once a week eat fresh beef liver for the iron, zinc and copper.
I'm guessing you're still on a fairly low dose and not optimally treated yet? You haven't said what replacement you are taking or how much or given us blood results. Probably you would need to be on your optimal dose along with optimal blood results for ferritin, folate, B12 and D3, then it would be a few months from then.
It's suggested here to get levels of key vitamins - ferritin, folate, B12 and D3 checked, post results here so people can advise on what needs work on. Hypothyroidism causes vitamin deficiencies regardless of diet, and if your key vitamins are not optimal you cannot use your replacement thyroid homorne properly.
As mentioned in my bio, I currently take 75 mcg Synthroid (brand name, taken 5 AM) and 10 mcg Cytomel (brand name) b.i.d. (taken 5 AM, 12 PM). For the previous 2 months, I was taking 72 mcg desiccated bovine thyroid per day, divided over 3 doses.
Please see my reply to Jazzw re: my nutrient status and what I have been supplementing with and for how long.
Just out of curiosity, do you have any references for the idea that "Hypothyroidism causes vitamin deficiencies regardless of diet" as I would like to do more reading in this area.
The poor vitamin absorption is caused by low stomach acid which happens in hypothyroidism. I'll link you an article by Izabella Wentz who many people rate for hypo issues. She talks about Betain HCL but a teaspoon of apple cider vinegar in water a day is a more natural way of helping the issue.
ahhh, yes. Hypochloridia. That would explain the low iron and B12. I tried the Betaine but found it gave me terrible acid stomach. I will try the ACV before meals, thanks!
Hypochloridia and/or atrophic gastritis (there’s an autoimmune version and one thing we see a lot here is that autoimmune conditions hunt in packs—if you’ve got one autoimmune condition it’s far more likely you’ll already have or will develop a second).
before I was diagnosed (and extremely ill - bedridden for a few months), my speech was at times “slurred” - I couldn’t get my tongue round certain words. It was a symptom that disappeared quite quickly compared to others - I can’t remember it being present once I started medication
Wow, thank you. Yes, I was that sick before being diagnosed too. I was hardly able to walk, and my speech was slurred— especially certain sounds (like "th—"). Hopefully once these new meds kick in, it will resolve . I'm sorry you were that sick too, but it is helpful to know I am not alone.
it’s a while ago now but I think similar issues - I have to make tannoy announcements as part of my job and it was really hard and I was very self conscious. I didn’t have a clue then what it was ! I am so much better now - I did 2.5 years trying to get optimal on levothyroxine, working on vitamin and iron levels but 2 months of combination t3 and t4 I feel I am getting my life back. It’s just a bit of a slow country bendy road rather than a motorway journey to full recovery
Hi yes I had a very swollen tongue and my speech was very slurred.My voice was also affected too, was as if I didn't have enough breath to finish a sentence of and my voice used to fade away before I came to an end of what I was saying.Also had a very gruff voice.but gradually got better once I was on meds for a while
Thanks. I didn't have any change in my voice, but now that you mention it, I did have the feeling of lacking the ability to control breath to speak. That resolved with all the nutrients I supplemented (before diagnosis and treatment). The tongue swelling is better, but still not able to say certain sounds.
I think the test of when it will be resolved is when Google voice recognition on my phone interprets what I say correctly.
A sore/swollen tongue can also be down to low ferritin. I have it too.
By the way, the water and mucin in my legs the first time took about 1 year on T3 only and keto to go down. I am not sure mine would ever get back to "normal" though as even then, they were still bigger than they should be, in a lymphoedema kind of way.
Thanks. I will be having my ferritin run to be sure. Taking heme polypeptide every second day, plus beef liver every week, but could be.
I've been keto / low carb for 5 years and maintained a 50# weight loss for 2.5 years. The myxedema was so severe in June, that I looked as though I had regained it all, and then some. My face looks normal now, but my legs are taking forever. I will be getting my 6 week labs done soon, to see if I need more T3. A year seems like forever!
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